zen.org Communal Weblog

March 21, 2011

Better sleep, feeling ok (B)

Filed under: — brendan @ 09:00 GMT

Got a sleep-in til 6:30am this morning.  Woo ho!  Night went pretty well.  Was up til nearly 10 waiting for my temp to go down enough so they could hook up the further blood transfusion.  (So much for my sleep-by-9 plan)  But I didn’t have to stay up—could’ve gone to sleep and they’d wake me up when it was time, but I wanted to challenge myself having already gone longer than I could’ve imagined.

Breakfast each morning presents you with these choices: porridge (a frequent for me), corn flakes, rice krispies, or a couple of single-boxed cereals whose-. names I forget.  You’ve the option to get a piece of rbead (white or brown) with butter and a package of jam.  If you’re interested, you can ask for a cup or two of orange juice.  That’s about the extent of it.  And the ever-present cup of tea.  (Though coffee co an option, I have little confidence in the quality of the coffee I’d be receiving. 😉 )

(As an aside, I’m typing this into GNU Notepad++, the best Windows text editor on the planet [if you’re stuck using that OS cuz that’s what’s on the laptop you’re using and will stick with til after all of this, at least).  I tried to add the spell-checker support, but after a few contortions I’m giving up.  The integration with GNU Aspell is found lacking—it needs to be fully automated, and not rely on the user do something independently and then restart the editor.)

A little less pleasant

One of the many inelegant side-effects of Chemo is the diarrhea.  Sometimes seveere, other times just “more solid”, shall ne say, it’s still frequent enough to make your lower half get a bit unhappy.  They’re given me two products to try to help with this: one is called Clini San Emollient, which is a gentle soap-free foam to try to clean and sooth the skin which is feeling burned by the frequency and strength of each episode.  The other is Zinc & Castor Oil Ointment, similar to the nappydiaper-rash cream we used with the boys when they were tiny.  Combined, these two things sure make a difference.  This experience is odd … they can and have given me Immodium in the past, but I get the impression that it’s in my best interest to let my body do its own thing rather than suppress it (for later).

A little more plesant

It’s early enough still, with clouds in place, that I’m able to raise the blind over the window by my bed and look out at the Dublin Bay.  Usually the signlight is too bright and harsh on my eyes.  This time, I could at least see the waves (with some effort, Mr Blurry Eyes) and across to Howth.  The buildings for the hospital don’t make it the most aesthetic view in the world, but given that I don’t realy have a selection, I’ll take what I can get.


On the tiny little box of a table next to my bed, I’ve got my HTC Desire mobile phone (for texts and often checking email), an iPhone (no SIMM but loaded with great podcasts), and this laptop.  There’s a small power strip plugged into the wall on one side of my bed where all the plugs are; it travels under my bed to the other side by the little table, where I can plug in these things.  I’ve also got an old-school battery-powered Sony Walkman which lets me listen to the radio (usually Radio1 or Radio Nova 100) with really good sound. 🙂  GIven my blurry eyes at the moment, it’s much easier than trying to get the same going on my HTC Desire at the moment.  (There was a good HTC app for the radio, but having rooted my phone I’ve lost the ability to get at that particular gem.  S’ok, still worth roting. 🙂 )

Our wireless society still hasn’t quite defeated the need to have a bunch of wires coming out of things in order to charge them.  Wouldn’t it be cool if your mobile or your laptop had a battery which, on atual use, re-charged itself?  A Prius Laptop?

What’s the magic number?

I’m suddenly curious what the actual number of pills and meds hppens to be what I’m taking each day.  Maybe tomorrow I’ll start the morning with a running tally and see where it ends up at bed time.

Post-meal routines

In the real world: “make sure to clear your place!”

In the leukemia chemo-loaded vulnerable-immune system world: “When you’re done,

1) rinse your mouth for about 30 seconds using a sodium chrloride irrigation liquid, which is basically salty water, then spit it out;

2) squirt some stuff called Mycostatin into your mouth and slush that around for 20-30 seconds.  It tastes a little sweet, and is meant to prevent fungal infection (thrush) in your mouth, throat, and gut.  Anyway, you swallow this one, and I try to then not sip water for a little bit to let the medicine to its job. and

3) finally, I’m supposed to be using eyedrops about every 4 hours to prevent conjunctivitis.  The Pred Mild tiny bottle I use does the trick, which I try to group with the after-meal routines since that makes it easy to rememember and usually gets it close to target.  The exception is at night … I always have to do another dose of drops before I go to sleep.

The drops themselves actually burn, ever so briefly, when they’re applied.  A surprise the first time it happened, the feeling is now less of a shock and I just take it in stride.  (Like everything else?)

More information coming

Hopefully today, or realistically tomorrow, the doctors will get the results of the probe (alien probe? no) into my chest on Friday where they did a biopsy and some samples.  Elana filled me in on just how stoned out of my gourd I was after the anaesthetic they used on Friday—the afternoon and evening of which I really don’t remember a thing.  Anyway, I’m hoping they’ve figured out whatever infection is causing me to get brief coughing fits, since the x-ray itself showed an infection.

More later.

P.S. Current body temp 36.7, woo hoo!  37 is perfect, it’s when my fever goes up to 97.8-38.2 that it causes havoc because then I have to be given paracetamol (Tyloneol) to bring it back down in order to receive the platelets or blood transfusion.  I don’t know that I’m due any of those things this morning, but the absence of a fever is wonderful.

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